Despite the high social value of adolescent HIV prevention research in sub-Saharan Africa, investigators are reluctant to involve adolescents in studies with HIV testing and disclosure of results because of ethical concerns about the risks of their participation. This study examines four inter-related ethical issues essential to adolescent HIV research: the effects of disclosure of HIV test results on adolescent psychosocial well-being, health-seeking, or risk behavior; minimizing harms in the recruitment of adolescents; comprehension of informed consent among parents, children, and adolescents 18 years and older; and the appropriate use of compensatory payments for youth and parent participation. The study setting is Siaya County in western Kenya.
- To examine the effects of HIV testing and disclosure on adolescent behavior and psychosocial well-being in the context of a research study. About 4,200 adolescents aged 15-19 will participate in an empirical study of HIV testing and disclosure per the standard of care to inform ethical guidelines.
- To examine stakeholder perceptions about adolescent HIV research methods for recruitment, informed consent, HIV testing and disclosure of results, and compensation/inducements for study participation.
- To develop guidelines for the ethical conduct of adolescent HIV research and to refine them in consultation with key stakeholders. Findings from Aims 1 and 2 will be used to develop preliminary guidelines for conducting ethical adolescent HIV research. Perceptions about the guidelines from the Kenya advisory boards, and from comparable focus group participants and local ethicists from two additional sub-Saharan countries will be analyzed and used to refine the guidelines and assess their generalizability.
- Winfred Luseno, PhD, Pacific Institute for Research and Evaluation (PIRE)
- Stuart Rennie, PhD, University of North Carolina at Chapel Hill
- Denise Hallfors, PhD, PIRE
- Hyunsan Cho, PhD, PIRE
- Daniel Kwaro, MBChB, MPH, Kenya Medical Research Institute (KEMRI)
- Amek Nyaguara, PhD, KEMRI
- David Ayuku, PhD, Moi University
- Muhammed Afolabi, PhD, Gambia, Medical Research Council
- Arthur Caplan, PhD, New York University
- NIH-National Institute of Mental Health (R01 MH102125, 9/1/2014 – 8/31/2019)